Charlotte Bevan, fierce advocate and activist, died at home January 13, 2014.
A mother of teenagers, wife of a farmer, parent advocate for parents of eating disorder patients, major contributor to the Around the Dinner Table forum, writer of short information films, Expert Carer for the Eating Disorders team at the Maudsley and Breast Cancer patient.

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Tuesday, 27 August 2013

Mother seems to function at the level of her children....

For all my readers who are rolling their eyes at "another eating disorders thing" blog, please pay attention. Especially those of you who live in the UK.

You NEED to know what happens to parents of children with eating disorders. You NEED to know how crap our mental health teams are in this particular area and you NEED to know that, although the child is now safe and Inpatient at a good facility, she came close to dying at the age of 14.

If I don't tell you, you will read some "fluff" piece in the Daily Mail and pass it by, thinking that somehow it was the parents' fault for not stopping a wilful child from making herself sick. That is not how it is.

"My daughter is 14, has had bulimia since she was 12 (that we know of). We sought help from the GP Dec 2011.Ref'd to CAMHs & been having mixture of professionals moving in and out of our lives, usually seeing someone every 3 weeks. A psychologist at the moment & family therapy,( we dont gel with the counsellor.) Weight is a little below normal, size 4 - 6 clothes. She eats up to five huge meals a day and vomits every time she eats. In between she snacks. The snacks usually stay in. I have food hidden around house,locked in shed and I buy little and often as I have three others in the house to consider. Often we run out of food. Food bills are enormous. She starves herself until she gets home from school when I am not in & house is empty. Mood swings are vile. Violence against me is frequent & police often involved.

How do I manage the food malarky - daily shopping? locks on kitchen door?

Am I missing out on any treatment that I ought to be getting?

What works? Anything?

How bad is this level of bulimia? How bad could it get?

No side effects that are visible yet ie teeth rotting, blood tests weekly are normal.

I have read books & just ordered another - Helping your Teenager Recover from an ED - by Lock and Le Grange.

Local pro's are looking into inpatient care but cant locate any atm. (UK, Sussex )

She's on medication - prozac 40mg daily.

Dont know what to do with her to help get rid of ED. She doesnt want help. Pro's are too soft & they let her walk away from talking if she doesnt feel like it! Wet Woosies. Sorry this is long - its my first time.

__________________

NELLY

D 14, bulimic since age 12.

I reached the end of my tether, tied a knot in it and am hanging on."

Nelly's first post in June of this year. To understand just how dangerous purging is and how lethal bulimia is, please read this. BN is very very lethal very quickly.

To be honest, you have to be really desperate and frightened, as a parent, to go trawling round the internet, find a forum and post to a load of international parents from different countries and health systems. It takes a lot of courage and often means you have reached the nadir. Nelly had.

The frightening thing is that, from the outside, Nelly had been receiving help from her local West Sussex CAMHS (Child and Adolescent Mental Health Team) SINCE MARCH 2012. Fifteen months and a spiralling decline.

Nelly recently contacted her local MP and has managed to get a copy of her notes - reviews and such like. It is becoming clear that the East Sussex CAMHS team lay the blame for her daughter's eating disorder firmly on "dysfunctional" family matters and on her parents "not setting boundaries". Really? Really?

"Mother seems to function at the level of her children"(October 2012). WTF does that even mean?

"It is clear there are no safegaurding concerns, as both parents, well meaning and caring for their children seem to struggle to implicate sustained boundaries..." (Oct, 2012)

So the parents try to put in place "sustained boundaries" with regard to X's eating disordered behaviour and then the worst happens. X tries to attack her parents with a knife and the police have to be called. This child is 13 at the time.

"X has identified when family try to intervene while she is bingeing and purging that she can become threatening and aggressive. She has threatened parents with a knife which has caused police to enter their home. has agreed not to do this in future ...she will let out her frustrations on inanimate objects such as footballs, cushions. X is reluctant to engage with services.

For the next two weeks the family will not intervene in X's pattern of eating." (Undated but between above incident and January 2012)

Sorry, East Sussex CAMHS but at what point is a 13 year old girl, with an eating disorder, high anxiety, refusing to "engage with services", who has threatened her parents with a knife, is engaging in medically compromising self-harm and progressively declining both mentally and physically NOT on your radar as someone who needs urgent, specialised treatment. Er....that would be late in 2012, then. Meanwhile, why not disempower the parents and bar them from intervening in the "pattern of eating"?

In January, a specialist team were supposed to visit twice a week for the next four weeks. Needless to say the enthusiasm (?) wore off quite quickly and these visits ceased. X refused to be at home when they came round, so they gave up. (There's a surprise)

By this stage, the self harming was reaching alarming levels. Nelly was getting frantic and demanding more care for her daughter and her family.

The final letter, from the Chichester CAMHS team to the private hospital, where X is now on 24/7 one-on-one care and SAFE, was probably the most condemning of the family and the most blatant "butt-covering" crap I have read in a long time.

"History - over the first six months of 2012 it became apparent there were systemic issues within the family, which made it difficult for the family to often attend or even bring X to her individual sessions...(Red flag. I would call this a red flag that something is really wrong. You seem to think it is the parents fault. Did you support them? Or help them to find strategies? Or do your job in any way?)

..in Family Therapy sessions the extent of the difficulties the parents experience in laying down boundaries for their children became quite clear (And you helped how? What "boundaries" were you expecting? Did you make these clear? Write them down? Discuss them? Or are they in the Care Plan that is "not in the appropriate form" to share with the family?)

..her mother especially was becoming quite anxious with regards to Xs bulimia and started to text the CAMHs team daily. (As is her right. To me, that demonstrates she is a good mother trying anything to get help for her sick child. You, on the other hand, make it sound like she is a pain in the arse to you. Stop you reading the latest Heat magazine did it? You obviously have not been reading anything 21st century about eating disorders.....)

..she was frightened to stop X from raiding the freezer and binging. The family seemed to be overwhelmed by their childrens behaviours and at times were confused by the multi discipline team supporting them. (Firstly I question the "support". Secondly eating disorder behaviour is overwhelming)

The team offered outreach work...but there were occassions when the family would let X sleep vs attending individual appointments...(Note from Nelly: "once when X was ill she was asleep downstairs and they woke her up anyway")

.At home her parents feel it is difficult to stop her and Nelly in particular can be quite scared of X(Was this before or after you "agreed" that the family should not intervene in the binge/purge cycle and before or after the police had to be called and I am sure it was during the horrific periods of self harm)

..Our observation is the children have more control than the parents (Sigh. Sigh. Sigh)

..We are concerned that if the family continue to engage in such a fragmented and disorganised manner with the supporting services then a referral to the safeguarding team would be appropriate....(Like the family is "choosing" to live like this?)

Xs view - X is very resistant to change with regards to her bulimia. When asked what she would like to be different she said she would like the everyone to stop arguing...(A family of an eating disordered child are under unimaginable stress - just as any family of a very sick child is.)

..consideration to safe guarding issues which may arise and have already at times impeeded the family's therapeutic engagement within the community setting." (What is a therapeutic engagement within a community setting?)

For those of you who have not had a child with an eating disorder, this may all sound very plausible. For those of us who have, this reads like a well-worn record of ignorance, stigma, platitudes, parent blaming and arse covering.

Shame on you, East Sussex CAMHS, Chichester. If I can learn about eating disorders, so can you.

One question I would like the East Sussex CAMHS team to answer

If this child had been diagnosed with schizophrenia instead, would you be saying these things about parents, dysfunction, "resistance to change", boundaries and such like.

I don't think you'd dare, for fear of the backlash from very fine organisations such as Rethink. The parents of children with eating disorders may not have had much of a voice up until now, but we are coming over the hill.

16 comments:

This sickens me. That poor family. West Sussex CAMHS should be ashamed of themselves and need to seriously update their knowledge of EDs and sort out their support systems.

I also had cause to complain about East Sussex CAMHS a few years ago - it was never totally resolved despite calling in the local MPs support. Now my daughter is under the care of SEDCAS - Severe Eating Disorders Consultation and Assessment Service - as part of the adult services support. Just this morning I sent a letter of complaint about their apparent lack of support, allowing her to remain at a low weight for Anorexia Nervosa with no quality of life, amongst other things ... including not including me in their support, such as it is. I get the distinct feeling, as does my daughter, that they just can't be bothered to help. Or to use my daughter's words, they can't be arsed.

I feel so angry for Nelly and her family. Thank goodness her daughter is now in a safe place. I hope that when she's discharged, she gets the RIGHT support, and that Nelly is supported properly too.

This is so heart-breaking. Dealing with your child ? age with such a degree of self-destructive and even threatening attitude has got to be one of the most stressful way of life.... and having to count on support that fails so badly.... Diane

I am writing to express severe concern, dismay and heartbreak over the failed treatment and care of a young girl suffering from a severe eating disorder, having been treated by W Sussex CAMHS. Here is a copy of a blog post written by Charlotte Beven from the advocacy group I belong to in an effort to more succinctly outline the problem: http://charlotteschuntering.blogspot.co.uk/2013/08/mother-seems-to-function-at-level-of.html

As a mother of a daughter who at the age of 15 was diagnosed with Anorexia and the challenges that presented, I thank God I found help and support outside the eating disorder service we were with at the time. My daughter self-harmed, attempted suicide, was violent and threatening towards me, the person trying to reefed her 6x daily, and I was black and blue all over for nearly a year as a result. Yes, I too had to phone emergency services on a number of occasions, all in the name of trying to save my daughter's life from a severe mental, but treatable, biological brain disorder.

The evidence of family involvement is considered the first and gold standard approach tof treatment. It saddens me time and time and time again to hear stories of this nature and they are far too frequent here in the UK. On the basis that Family Based Treatment/Maudsley evolved from the UK, our top eating disorder professionals from the IoP, SLaM and Kings College frequently train the leading clinicians in the US and Australia who run treatment centres of excellence, why oh why can we not get this right in the UK?

I read Lock & LeGrange's Treatment Manual for Anorexia and used this to help my daughter achieve recovery. The eating disorder service was of no help what so ever apart from our wonderful dietician. It is imperative that re-feeding up to a level of a healthy weight (not just a BMI of 18.5 but 22) and maintaining that healthy weight, can a patient move forward with psychological therapies. During the re-feeding process parents need guidance and support, particularly in dealing with the extreme anxieties of the patient. Parents are so desperate to help their child and simply don't know how. I was lucky, I completed my BSc in Psychology and specialised in neuroscience so I understood the importance of re-nurishing the body to heal the brain.

The actions or non-actions of the W. Sussex CAMHS is reprehensible given the most current research and treatment approaches of the last 10 years.

How utterly, utterly shameful of them.

Here is another story of how E. Sussex failed another patient and their family. This post is written as a guest blogger to convey her families experience. I hope you will take the time to read the comments as well.

A resource filled with ACCURATE information about eating disorders, getting the RIGHT kind of help and a support forum for parents (helped me save my daughter's life) please see: http://www.feast-ed.org

FOOD IS MEDICINE, Eating Disorders are Biologically Based Brain DisordersHere is a letter written by Dr. Tom Insel, Director, Institute of Mental Health, to Feast 2 years ago outlining his view:http://www.feast-ed.org/TheFacts/DrInselonEatingDisordersandStigma.aspx

I am fortunate enough to have secured a meeting with Norman Lamb, Health Minister of Care and Support in the UK, to discuss the state of failure of treating eating disorders in the UK in early September and shall highlight both these cases amongst others, demonstrating the extent of the failures in the UK.

Correct me if I'm wrong, but I didn't read any examples of where the parents ARE setting boundaries, outside of the 'crisis' moments when they finally try to intervene (and when intervention is least likely to be effective). Did I miss something?And when I read the comments about the parents needing to set boundaries, I didn't automatically think "they're blaming the parent for her eating disorder". I thought: Hey, the parents are saying they don't know how to set boundaries with an argumentative girl, and the therapists are saying that boundary-setting is something they need to work on. Aren't they actually in agreement?

"this is shocking and sooooo cruel. And yet so hard to explain to the uninitiated how wrong this is."

An eating disorder is NOT a choice. Bulimia or B/P is most often a form of anxiety disorder and the bingeing and purging relieves the stress. This is not a case of a "naughty" child who "wants to be thin" nor a case of "control" or any other such misconception of eating disorders as are out there in the general public. This is a description of a very sick child, who is compelled by a "brain blip" to act in this way to relieve her unbearable anxiety.

You can't just tell her to stop. If it were that easy, eating disorders would not be the most lethal psychiatric disorder there is.

I again ask the question. If we were talking about someone with a different psychiatric disorder about which there are not these pre/misconceptions - like schizophrenia, borderline personality disorder, autism, OCD, anxiety disorder - would you be asking the same question about the parents' "setting boundaries".

The point is that boundary-setting doesn't really matter in this situation

There is not a shred of evidence that a household without firm boundaries causes eating disorders or that setting boundaries prevents eating disorders.

What matters is that eating disorders are biologically based mental illnesses that are nobody's choice and can kill.

Charlotte's point about schizophrenia and other mental illnesses is a good one. And to take it even further, what about cancer? Would any doctor suggest that a biologically-based illness like cancer was the parent's fault for not setting proper boundaries? Would they delay and obstruct help to a suffering child to take time to reprimand the parent?

If this were cancer, the parents would be given counseling on how to get through this hard time and how to take care of their daughter. That is what these parents are looking for.

Many doctors and therapists meet families when they are already in crisis and seemingly dysfunctional. In most cases of illness and mental illness, the dysfunction came along because of the illness and not the other way around. It's incredible that so many people working with families in crisis are not able to understand this.

I always find it interesting when someone is willing to assume facts not in evidence for the party(ies) who have privilege and power or are otherwise in the stronger position (in this case the CAMHS team), but are FULL of questions and interrogations for the person in the subordinate or marginalized positions. And by "interesting", I mean "makes me suspect they are biased in favor of the dominant discourse".

Even still, I beg to differ that there are no examples of boundary setting within the presented evidence. Nelly wrote "I have food hidden around house,locked in shed and I buy little and often ". Which indicates she actually IS setting boundaries, by putting barriers to binge-behavior in place. She's calling the police when behavior gets violent; again, suggesting not only a boundary, but follow-though consequences. And just FTR, "frequent violence" and threatening with knives is FAR beyond "argumentative girl" and right into abusive behavior that needs professional intervention. (And do you make a habit of berating DV sufferers for weak boundaries?)

Meanwhile, the CAHMS team characterizes a woman who is managing to parent other children, is creatively trying to deal with day to day difficulties of chronic binge behavior, is self-educating by reading and engaging in self-care by reaching out for support ALL while dealing with violence at home, as "functioning at the level of her children". ORLY? How many children do we know would actually function under those circumstances? For that matter, how many of the CAHMS team, whose clinical treatment over 15mo was ineffective, would be able to function under those circumstance.

I am also unsure how CAHMS language - "the family continue to engage in such a fragmented and disorganised" "systemic issues within the family" - and all the rest, can be read in any *other* way, than putting "the family" at fault.

But here is the main issue. Of the CAHMS multi-disciplinary team and The Family, ONE of those groups are trained clinical professionals, whose JOB it is to handle and treat children with mental health diagnoses. THAT is the group who failed to do their job, if over the course of 15mo, the child got worse, instead of better.

I think sometimes these conversations are becoming too black-and-white. If you look at other diagnoses, a child deteriorating can have a few causes:- Inadequate medical / psychiatric care due to unskilled professionals- Lack of resources (which is the policymakers', not the professionals, fault - most professionals are enormously stressed by being unable to offer what they would like to offer and this is a major cause of burnout)- Parents being unable or unwilling to follow the treatment plan (rare, but this does occur with all types of illnesses, stigma or no stigma)- The illness is so severe that despite everyone doing the best they can, the child becomes more sick. I think it is unfair to blame this on either parents of professionals.

It does not sound like this family has boundary-setting issues, it sounds like they have a dreadful and judgmental professional team. But boundary-setting issues can be a problem in the treatment of eating disorders, just as they can be a problem in the treatment of schizophrenia, anxiety, OCD, diabetes, and childhood cancer. I would venture to say that because eating disorders are essentially an anxiety disorder that responds to EXRP, like OCD, there are huge demands for boundary-setting, far and above normal parenting, so families that already had a hard time with this or chose to parent with loose boundaries might benefit from nonjudgmental coaching. Discussing this could easily be part of an effective FBT treatment plan, if a particular family did struggle with it and wanted help with it. Of course some professionals are truly not doing their job, but there are many others who are compassionate and informed and who shouldn't be demonized for trying their best to treat severe illnesses that have a less than 100% full recovery rate at even the very best and most well-funded programs. I think you are completely wonderful and I know that is not really what you are saying - I just think sometimes it can sound like "parents vs professionals" even when the issue is really severity or resources, and it is better to work together .

This story is heartbreaking but at least now Nelly has got specialist help.East Sussex CAMHS - in no other area of medicine would the 'professionals' be allowed to get away with not updating their skills and knowledge. Your comments indicate ignorance and prejudice and I sincerely hope that this public shaming will encourage you to get your staff informed, trained and compassionate. That this kind of 'care' can still be going on when there is so much scientifically proven data on eating disorders being brain based illnesses with a genetic and biological base which can be treated when the right supports are in place is, quite frankly, disturbing.Thank you for the post, Charlotte. This case needed to be brought out into the open.

I've experienced the E.Sussex outreach team, and I suppose I was lucky in that I was able to develop a relationship with them, however, they seemed, even 3-4 years ago, extremely reluctant to get involved unless you were at immediate risk of death, or unless you went to them asking for help. It seems like professionals across the board are reluctant to diagnose or attempt to treat EDs until they become severe and life threatening - I know of at least 8 people, myself included who had to really fight to get any treatment at all (I got none from the CAMHS team for my AN). I hope this post and any complaints that go to East/West Sussex Healthcare trigger a change in policy.

I live on the E Sussex Border with Kent. My daughter aged 13 entered the CAMHS Community in ken and also we opted for private Psychological care in E Sussex.... Oh Hum..... And WTF... both were testing and stressful and honestly not worth the time or money. As a parent who has also suffered from an eating disorder guess who the "team" look to when wanting answers. My daughter now twenty is stable, still tiny, and has her own way of eating but eating she does. When her weight dropped to just over 4 stoneI lost the plot one day and made her plan her funeral including buying a coffin! Drastic but it worked.....

As an eating disorders-specialized psychiatrist in the United States, I am dismayed to see that a professional mental health team allowed behavioral deterioration which included violence towards self and others to go unchecked. This level of behavioral dysregulation required acute intervention, regardless of etiology. In addition, advising the parents to not interrupt the binge eating behavior demonstrates a gross misnunderstanding of the basic principles of behavioral intervention, with the rationale seeming to be "if it upsets her that you interrupt her medically dangerous and psychologically destructive behavior, then don't interrupt it."

Thank you Charlotte for telling this story. I would love to know if East Sussex health authority is reviewing, re-training, monitoring, and making sure East Sussex CAMHS becomes up to date with eating disorders. Or will the professionals put all their efforts into justifying themselves?This matters because this same type of story is happening elsewhere, and we need to know what can bring change to particular CAMHS teams asap.